Some days, some months, some years, it takes courage to get out of bed and do the job of raising our children with special needs.

The Merriam Webster Dictionary defines courage as “mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.”

That pretty much sums it up.

Some days it takes courage just to get dressed, get our kids dressed, and get everyone where they need to go. Sometimes it takes courage to face special education committees to advocate for your child. Sometimes takes courage to advocate for our kids to the youth group leader, Sunday school teachers, summer camp leaders, neighbors, family, school, etc. Etc. Etc.

Sometimes it takes courage when a day has been a complete and utter mess, exhausting everyone, to get up the next day and start again.

But, when you live your life with courage, others are encouraged.

When my children were young, sometimes tears would slip down my cheeks when discussing my children’s difficulties. I am sometimes an overly emotional person. I can’t always keep smiling in the face of difficulties. Actually, I can rarely keep smiling in the face of difficulties. That’s not me. During these meetings sometimes my kids’ teacher consultant or social worker would tell me that they would bring me up as an example to other parents. I didn’t really believe them. I thought they were just saying that because of their discomfort with my emotions.

I was reminded of those meetings when I visited with my parents at my brother’s house this weekend. My sister also showed up from the other side of the state. She is a nurse, with wildly varying hours, so it is not easy to see her, or even talk to her on the phone these days. (She ended up having to leave early because she is on call for two weeks). While we were talking about her youngest son, she mentioned that she knew how to advocate for him because of our many conversations when my kids were young and watching how I handled my kids. She told me that he has some autistic features. “He has autism?” I said. She nodded. Thinking back on it, I can see it in him. He is in his third year of college planning to go into computer programming. He is on the high end of the spectrum, so they didn’t realize what they were dealing with until much later in his education.

16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.

If I have a life verse, this is it. Practicing thankfulness was the way out of darkness, out of depression, out of despair.

We were thrust into the world of special education when my oldest daughter was five years old. At the young fives qualification testing, she tested at 2.5 years in reading and math readiness. Instead of thinking about young fives placement, we were offered placement in a pre-primary impaired program. Instead of thinking about the academic achievements of my children, the sports achievements; we began thinking about slow, steady progress, two steps forward, one step back. I dreaded the beginning of the school year. And I mourned the sudden loss of dreams for my daughter. I questioned everything we had done up to that point in raising her. I wondered if something was wrong with me and/or my husband.

Within that year all three of our kids qualified for special education placement. In hindsight, we should have been able to figure out that something was wrong. There were clues.

After our oldest daughter had been in her pre-primary impaired class for a while, I mentioned my concerns about my son. He was very easily distracted. He turned the lights on and off, constantly. He opened and shut doors to the extent that we had to put spring locks high up on all the doors to keep him from shutting the doors on his sisters’ fingers. He was a screamer who insisted on sameness. Everything he possessed had to be green if there was a choice. He had to have his sandwiches cut in triangles. We should have known. We should have known.

My daughter’s teacher also felt that my son should be tested. So an appointment was made for my son. After two tests, which was all he needed to qualify for special education placement, the teachers, social workers, psychologists, and therapists felt that he should be tested more. In all, he went through eight evaluations. It was emotionally draining. My husband and I, along with our local school representative met with all the evaluators in one big meeting to go over the meaning of the tests. My husband did not want to go because he felt that all they were going to talk about was what was wrong with his little boy. They said he was mentally impaired, had a mild speech impairment, and had autistic traits. But one of the testers told us we should not get involved in the local autism society. (We received some less than stellar advice along the way).

Toward the end of my son’s evaluations, the testers suggested that my youngest daughter also be tested. At this point, I was weary of testing. I told them that they could only perform two evaluations; they could only do what it took to know if she qualified for special education services. She also qualified for special education placement. At this point, my older daughter and son were in opposite sessions of preprimary impaired preschool; one in the morning and one in the afternoon. The teachers wanted me to bring my youngest daughter to the special school for her therapy. I said no. I cannot be stretched that much.So they had a speech therapist come to my house for my youngest daughter once a week.

The first two years of dealing with all the meetings and special education therapy homework from the school took a toll on my emotional health. I was depressed and crying all the time. We became isolated from parents with normal children, even my siblings. Part of that was our withdrawal – I could only stand so much bragging about how advanced their children were.

When I thought of the future, there was a wall before me. I couldn’t visualize the future. I couldn’t see the light at the end of the tunnel. There was so much fog, I wasn’t even sure there was a tunnel.

Then God gave me this verse.”Rejoice always, pray continually, give thanks in all circumstances for this is God’s will for you in Jesus Christ.” (I Thessalonians 5:16-18)

I decided that even though I couldn’t see the future laid out before me, I could give thanks. Every day. I could do God’s will. I could obey God in doing this.

As for praying continually, that was easy. I was doing that already, every day. Some of the the praying was questioning God’s wisdom in choosing me for this job (James 1:5) Some of it was crying out to God. Some of it was seeking wisdom, because God says that he will not upbraid a person for asking for wisdom.

But rejoicing? That was a bit much to ask of a person. I found that to be very difficult for a long time. So I practiced what I could do, and waited for God to tell me how I could rejoice. Eventually, I began to sing songs of rejoicing. Just by singing those songs, I could rejoice.

As I began to practice purposeful, intentional thankfulness, my depression began to lift.

When we began going to autism workshops and conferences, we found ourselves the subject of many sales pitches for the newest therapies that would produce miracles.

We also were sometimes pressured by parents in the local Autism Society to make a commitment to purchase a certain therapist’s services in order to “bring her to our community.” Enough parents had to participate in order to pay for her services to make it worth her while to come. Auditory integration training would cost $2,000 for a set number of therapy sessions. Music therapy was $100 an hour.

There were two problems with this.

First, we could not afford it. We were just scraping by as it was. Several options were presented – beg the money from our relatives, put it on a credit card, get a bank loan or a second mortgage on the house.

Second, which one of our children would we choose? Choosing them all was out of the question.Should we choose our gifted, disruptive autistic son or our quiet, multiply learning disabled autistic oldest daughter? Or our youngest, questionably autistic daughter? An impossible choice.

Therefore, we said no. As result, we were ostracized for not “participating for the good of all the children in the area.”

Instead, we chose to invent our own therapies out of ordinary life.

We listened to classical music in the house for our music therapy.

We were blessed by a piano teacher who was willing to try to teach my son. He enjoyed music, singing in tune with gusto. After a year, she noted that he had an aptitude for music. She taught him for 12 years. After that year, we ask her to teach our oldest daughter in order to improve her finger strength and coordination. I thought it might help her learn to hold a pencil. My youngest daughter wanted to do what her brother and sister did. This cost $10 a week per child – a pay as you go therapy.

We chose to take advantage of community subsidized speech and occupational therapy offered by Easter Seals and the Rehabilitation Hospital. These required small payments times three.

In spite of extended and persevering effort, learning to ride a bike did not happen. Instead, we found equestrian therapy – offered at a discount due to the generous donations of the community – also paying as we went. Our children were unable to ride a bike due to balance issues, but they were able to eventually learn to ride a horse independently.

These choices stretched us financially, sometimes heavily, but we made the sacrifices on a weekly, monthly basis. Choices of “miracle therapies” with little proof of efficacy would have bankrupted us.

When I was a student at the State University, I qualified for Honors College.

Membership in the Honors College had three distinct advantages.

We could register for our classes before all other undergrads, except for elite athletes. In those days, registration meant standing in long lines to get a Key Card (an ancient computer punch card). By going first, we were able to get the classes we wanted and stand in fewer lines.

The advisers for Honors College Students were full professors with high status in their departments.

Honors College students were allowed to take Honors Classes, taught by the best professors on campus in small classes. My non-honors trigonometry class had 300 students; my honors psychology class on special topics had 30. A class with 30 students was a rarity on a campus with over 40,000 undergrads.

During my junior year, I took an honors humanities class, which was limited to 12 students. On the first day, we assembled in an ornately decorated conference room, lined with book cases in one of the oldest buildings on campus. Our professor was late. Continue reading →

Yesterday, Mary and I went to an appointment to close her case at the State Rehabilitation Services office. This agency helps people with disabilities, addictions, and other barriers to employment find employment. They have funds to help with education, transportation, testing, driver’s training, bus training, etc.

When Mary graduated from high school in 2005, the State Rehabilitation Services offices took over her transition services. They paid for neuropsych testing to evaluate her skills and her ability to complete job training or college, and find employment. Continue reading →